Beach Pictures

Here are a few more pictures from the beach (late!).  This was Waverly's first time ever in a swimming pool.  She liked it!  :) 

 Big sister was so happy to have her little sister swimming with her!

 Getting some great-aunt love!

 She had some crazy hair too!

 A few family pics.  :)

Another UTI...

Waverly woke up on Tuesday morning of this week with 4 seizures and a slight temperature.  So after finding a place for the big kids to go, we headed on over to the doctor's office to get her checked out.  I already suspected a UTI.  After 3 catheter attempts, and a long wait for her bladder to fill, we finally got a urine sample.  It looked clear and the initial quick analysis was clear, but two days later the lab report from the culture came back positive for pseudomonis again (the same bacteria she had last time).  Apparently this type is very resistant to antibiotics, and isn't stopped by the prophlyactic antibiotic she currently takes daily.  So, she's back on Omnicef to treat this infection, and we are doing lots of research to try to figure out why she's gotten 4 UTIs now in 5.5 months. 

Conversations

This morning, I had a quick but sad-to-my-heart conversation with my 5-year-old.

K: "When Waverly gets older, she'll be like, 'Your name's Kathryn, and my name's Waverly."  pause....  "She'll say that mom, right?"
me: "What do you mean?"
K: "Will she say that?  She will, right?"
me: "Well......, she probably won't be able to talk.  But she can still talk to us in her way."
K: "Yeah, like she can say 'hmmm' and cute stuff like that!"
me: "Yup, she talks to us in her own way.  And that's very special.  Just like it's special how you talk to us too!"

It's so hard for me to not feel like I am dashing her hopes in who her sister is going to be.  I know kids are resilient and often it's our own perceptions imposed on them and their feelings.  I try to be honest but gentle in my answers to her questions, which are actually pretty few and far between.  But they are still hard for my mama's heart.  In the meantime, I know that the Lord is molding her into an amazing person who will have such a compassion and heart for others.  The matter-of-fact way she deals with some of these hard things, like seizures and seeing her sister blue and noticing that she's different from other babies is already shaping who she is and who she will become.  I pray often for the Lord's plan for these two older kids and all they are experiencing through this. 

Updated Info

So, we haven't seen any of her "blue seizures" (as we call them) since last Wednesday!!!  After having 23 of them in the previous 6 weeks, this has been quite a nice break!  So it appears that the Topamax is working (we started it last Wednesday).  She seems to be tolerating it pretty well, and we've even increased it since she's started it (it's a titrated dose, meaning we do it in incremental steps).  We are so thankful to see our baby pink, all the time, instead of seizing and blue every day or two.

With the extreme heat we've been having here, though, we have had to be careful with her since one of the biggest side effect concerns is the inability to sweat and control body temperature.  That means she could easily overheat, so we've basically had to keep her inside.  The times we have taken her out have been later in the evening when it's cooling off (and even then we've taken ice packs to keep around her), or one time at a friend's house in their pool.  When she wasn't in the pool (in the shade), she was still wet and in the shade with water being poured over her head to keep her cool, then inside their house.

We have also been trying her on a new formula, Pediasure Peptide.  It's a partially broken down formula and appropriate for "older" kids (as in, not infants).  She seems to have tolerated it well, so we are making the switch from her baby formula to that.  She's growing up!

She also now has 3 teeth!  She cut her third one, another bottom tooth, a few days ago.

Finally, today she was literally giggling.  Something Jackson was doing or saying was making her let out short little laughs this evening.  I tried to catch it on video but it distracted her and she stopped.  It was so fun to hear her giggle though!  We've never really truly heard a good, true laugh from her, but these quick little giggle sounds are music to our ears!

EEG Results and new med

Waverly had another EEG today at UVA.  It was ordered by her previous pediatric neurologist, who is now no longer at the practice.  We really liked him, especially since he helped resolve her Infantile Spasms, so I was nervous about getting a new neurologist since we liked the old one so much.  But, in this week we have already gotten two phone calls from him personally.  That's a good doc in my book!  (Apparently, when you call and say your baby has had 17 seizures in the past month where she's stopped breathing, you get really fast and personal attention!) 

The results from her EEG were pretty comparable to her last few.  She has really high amplitude with high spikes, and it's very disorganized.  That's to be expected and is normal for her.  They didn't capture any seizures, but she was only hooked up for a short time.  So, no change in her EEG reading. 

In the meantime, we are adding a new seizure medication to the list.  She'll be starting Topamax to see if we can resolve all these nasty seizures she's been having.  As of last night, she's had 18 breath-holding seizures.  That's 18 times that we have seen our baby blue, that we have begged God to give her one more breath, that we have had to run to her side and watch her eyes roll back and forth. 

Please pray that this new med will work, and that she will not have negative side effects.  One of the biggest side effects from it is difficulty in regulating body temperature, so please pray especially for that, especially since it's summer time and heating up.  We don't have central air conditioning, but we do have window units, so pray that she stays cool enough inside.  It will also mean that we have to limit her time outside, so if anybody wants to come and take the kids out in the evenings when we will have to keep her inside, please let me know! 

Vacation pics!

We were so blessed to be able to enjoy a family vacation this year!  Last year hubby and the big kids got to go, but Waverly and I stayed home since she'd just gotten out of the NICU and I wasn't comfortable with traveling with her (I was just learning how to care for her at our home!).  But this year, with LOTS of preparation and planning, we were able to make the trip down to the beach.  It literally took me weeks of calling (DME, hospital down there, preparation to make sure we had all the machines, prescriptions, etc. we needed, etc.), so by the time it was time to leave, I was ready! 

Our oldest got to ride down with her grandparents and great aunt, so it was just hubby, middle child, Waverly, and myself.  That worked out great, and both of the kiddos did wonderfully.  Waverly slept most of the way, and even J took a good nap.  Isn't he adorable?

Johnny's parents have a trailer that they store down at the beach, so we stay in a campground.  Here is a picture of our campsite. 

It was five sites away from the pool, which K absolutely loved the most.  You can see the pool area (fence) to the left.  Beyond that on the horizon is the beach.  It was within walking distance. 

We enjoyed a lot of time relaxing, swimming, reading, playing, and eating!  We all enjoyed lots of snuggles from Waverly, and she enjoyed being a beach bum!

 This is her after swimming in the pool, all wrapped up in a towel. 

 Here she is in her new neck ring.  It's a WaterWayBaby ring, and was really neat.  It basically keeps her head up and afloat, and lets her body enjoy the water.  It was neat to see her "weightless" in the water.  I was able to see her move and stretch in ways I've never seen before.  She's always enjoyed her bath time, but had never been in a pool.  I hope to be able to take her swimming more often and maybe even have some hydrotherapy sessions. 

 K and I enjoyed lots of time at the pool together.  Every moment she could get, she was in the water.  She's never had swimming lessons, but you'd hardly know.  She's all over the pool, even doing flips!  What a big girl!  She really loved swimming with Waverly too!

In all, Waverly did really well on vacation.  She did have 6 seizures during the week, mostly while sleeping in the middle of the night or early morning.  We have an appointment for an EEG this coming week, so hopefully we will be able to see what's going on in there, and have a plan for what to do about all these seizures coming back.  We are so thankful for the Lord's grace and blessing to us in such a wonderful time.  More pics to come!

Three's NOT the Charm

Last night Waverly had a terrible night of seizures.  Three to be exact.  That's three times she stopped breathing, three times of seeing my baby blue, three bouts of shaking and the ensuing twitching that occurs afterwards until she is able to drift off to sleep.  Last night, three was NOT the charm for us.  It was scary.  I stayed up most of the night watching her.  So today I went ahead and set up her ambu bag, hooked up to oxygen, to lay right beside her head as she sleeps.  So that if it happens again, we are all set to force oxygen into her lungs.  Because even though she's got oxygen going in through her nasal cannula, and we turn it way up when she's seizing and not breathing, if she's not moving any air it's not getting into her body.  So we will have to bag her.  

I'm not sure what last night was about.  She's been on her new antibiotic for this UTI since Saturday.  And she's fine during the day.  Please pray that tonight is a better night for her, that we won't have to "bag her" or take her to the hospital, that these seizures would TAKE A HIKE!